An Anguished Voice Falls Silent

A Remembrance of the AIDS Patient Whose Refusal to Go Gently Stirred a National Debate

She had wanted to make it to Christmas, to be part of one last ritual in a life cut short. But for Kimberly Bergalis, this was not to be. At 3 A.M. on Dec. 8, less than two years after being diagnosed with AIDS, the 23-year-old Fort Pierce, Fla., woman died in her sleep, at home with her parents, Anna and George, and her sisters, Sondra, 12, and Allison, 20, at her side.

In September 1990, Kim announced that she had contracted the AIDS virus during a routine visit to her dentist, David J. Acer. According to the Centers for Disease Control in Atlanta, it was the first known instance in which a health-care provider had transmitted HIV to a patient during a medical procedure—in Kim's case, a simple tooth extraction. Acer succumbed to the disease himself just days before her disclosure; since then, four more of his patients have been found to have been infected by him. There have been no other confirmed transmissions of AIDS from doctor to patients in the U.S.

Correspondent Meg Grant met Kim shortly after she went public with her illness and has remained in touch with the Bergalises, visiting from time to time. Here are her recollections of Kim, the most random of victims, as the young woman struggled to find some meaning in her terrible sickness and onrushing death.

I FIRST MET KIM ON SEPT. 21, 1990, AT the office of her attorney, Robert Montgomery. I remember the softness of her features, the clarity of her complexion, the striking blue eyes. She wore a cream-colored silk blouse and turquoise dress shorts. I noticed how her wide leather bell was cinched at the last notch but still fit loosely around her tiny waist—she weighed just 102 lbs. then.

Over and over she addressed the doubts we journalists had about how she might have become infected. Yes, she had had a couple of boyfriends in college and she liked to dance, but, yes, she really was a virgin. No, she had never used intravenous drugs or done anything else that could be construed as risky behavior. "It is hard to believe, I realize," she said. "But it happened. It happened to me." And what of her future, she was asked. "I think I'm going to have a positive impact on society," she answered.

Impact she had. In the months that followed, Kimberly Bergalis became a household name. She and her parents, Anna, 47, a public-health nurse, and George, 48, finance director for the city of Fort Pierce, appeared on television talk shows to campaign for mandatory testing of health-care workers and disclosure to patients by those infected with the AIDS virus. Many doctors objected, arguing that the cost of such a program would be huge in proportion to the risk of transmission and that careful observance of sterilization procedures and such precautions as wearing gloves and masks provide the best protection. They also said that the careers of those health-care workers who were HIV positive could be needlessly ruined. But Kim remained resolute. "I just went to the dentist," she would say. "I didn't deserve this."

No one does, of course, a point that Kim herself made. Yet she could also seem to lack empathy with other, more commonly infected, AIDS patients. To the benefit of all people with AIDS, however, Kim wanted the world to face the ugliness and brutality of the epidemic.

Last spring she went public with her despair. In an open letter in which she blamed Florida health officials for allowing Acer to practice while suffering from AIDS, Kim wrote, "I have lived to see my hair fall out, my body lose over 40 lbs., blisters on my sides.... Do you know what it's like to look at yourself in a full-length mirror before you shower—and you only see a skeleton?...Now I shower with a blanket over the mirror."

Inevitably, she grieved. She once said to me, "I regret that I won't ever experience having a child, but I try not to think about it, because it's not going to happen. I met this guy not long ago, and it made me angry and sad because I realized I should be doing the normal 22-year-old things like dancing and dating. But even if I went out with friends now, I'd get tired by 8:30 at night."

AIDS attacked Kim's system ruthlessly. In April she was diagnosed with mycobaeterium avium intracellular, an uncommon and often incurable form of tuberculosis that strikes people with AIDS. Her night sweats increased in severity, and she began running 104°F fevers.

Near the end of the month, she began experiencing periods of dementia. Kim's best friend, Geralynn Delevante, who at the time was working as a waitress in Tampa, remembers getting a call from Kim on the night of April 26. "She was sobbing," she says. "I couldn't understand what she was saying, but I got in my car and drove across the state to her house." When Geralynn arrived early the next morning, Kim was having hallucinations. "She thought the devil was after her and even thought she was the devil for a while."

Kim's father recalls that day as well. He says, "She was talking really strange, saying things like 'Dad, sit down, you're going to fall' or 'You better watch out for Mom, Dad. She's going to take all the money.' " It took paramedics an hour to calm Kim enough to put her on a stretcher. "At the hospital," George continues, his voice breaking, "she started hitting herself in the head, saying, 'God doesn't want me because I'm no good. I never helped anybody.' "

Drugs kept the dementia in check, but nothing seemed to slow her physical decline. When I visited in mid-June, I found Kim lying immobile on the waterbed in her bedroom, a paddle fan turning above her. She weighed less than 70 lbs., and her matchstick legs and arms protruded from fuchsia-colored shorts and a Greenpeace T-shirt emblazoned with the message YOU CAN'T SINK A RAINBOW.

She was unable to turn her head and had to search me out by slowly moving her eyes, but she recognized me and attempted a smile. Her slurred speech had deteriorated to mere groans, so my stay was brief, sometimes awkwardly silent, sometimes interrupted by my attempts at one-sided conversation. At one point Kim tried to speak. "Uhhh, uhhh, uhhh," she said, her bony hand trembling from her struggle to produce sound. Anna reached out and held tight to her daughter's arm. "Take it slow, Kim," she said. "Try to pronounce the words." "Uhhh, uhhh, uhhh," Kim moaned again. After a moment of silence, Anna asked, "Do you have to go to the bathroom?" Almost imperceptibly, Kim nodded. Relief filled the room.

Those were the days that we all thought would be Kim's last. For those who loved her, the hope was that it wouldn't drag on. That was Kim's hope too. One night when she was still able to speak, after Anna and George had bathed her in the tub, George tucked his daughter in bed with the words, "Have a good night's sleep. I'll see you tomorrow."

"I hope not," Kim replied.

But then, remarkably, Kim rallied. By late summer she was talking again, albeit slowly. She was gaining weight; her father confessed that he began to believe in miracles when he saw her eat a hot dog. She was walking with the help of a friend at her side. She had learned that California Congressman William Dannemeyer had introduced a measure, named after her, that called for what she had been fighting to achieve: required testing and disclosure. She decided she wanted to go to Washington to testify before Congress in support of the bill.

The trip to the capital was grueling. It included a 19½-hour train ride, sessions with crowds of journalists and a brief tour of the White House that, for Kim, required every ounce of strength she could muster. Kim's message, before a congressional subcommittee, took only 15 seconds. "I did nothing wrong, yet I am being made to suffer like this," she said in an exhausted monotone that rose barely above a whisper. "Please enact legislation so that no other patient or health-care provider will have to go through the hell that I have." In the end the Bergalis bill got nowhere, and Congress later passed less stringent legislation.

Just minutes after her testimony, she told me that she felt "relieved." She said it with the sincerity of a child, and I realized that for Kim the trip was more than a mission. It was also a young girl's first train trip and first visit to Washington.

When she returned to Fort Pierce, she went back to her waterbed and began her final decline. She ate less, she talked less, she slept. She endured the unrelenting symptoms of her illness with poignant gestures of dignity. Even toward the end, she would still reach up to smooth a hair out of place.

The goals she set for herself got simpler. She wanted to make it to Christmas. But after trying to change the world and fit a lifetime into a year, even that proved too much.

By Saturday, Dec. 7, it had become increasingly difficult for Kim to breathe. That night it was Anna, the source of much of Kim's fighting spirit, who kissed her goodnight and gently suggested that it might be time to stop struggling. Then Kim fell into a sleep from which she never awakened.

Last week Kim, as she had requested, was taken to Tamaqua, Pa., where she had been born. There she was to be buried in a hillside cemetery close to the graves of her grandparents. Kim chose the site, she said, "because it's the closest place to God I can imagine."